Misery of blindness

Did you know? How devastating it can be to be blind when things go wrong? Free smoke alarms aren’t all they’re cracked up to be?

Here’s a day in my life and what drives a normally competent and confident woman to rage and despair:
After a couple of productive hours in the office, the trip to the UK’s leading eye hospital was pretty straightforward: finely choreographed pass-the-parcel from taxi to train to taxi again. Lots of people think it’s terrifying to travel alone without any sight but it works perfectly well with planning and people willing to step in as guides. And the dog option is a non-starter for me.
But everything went downhill at the hospital: the place was awash with people evacuated after the fire alarm. Once the sirens had abated and the building re-opened, luckily I was rescued by another patient from a solitary vigil somewhere on the pavement.
At the clinic, you have to book in with the clerk when he gets there. But that’s impossible once the porter has sat you down and you can’t see if the clerk’s arrived or how to get to him. I just leave my paperwork on the desk. But it would be madness to rely on this – so I need some help. If you can’t feel someone sitting next to you or hear someone passing, it means calling out for help – which produces a deathly hush! It’s an unfamiliar place so I can’t move and have to rely completely on what I can hear to have some idea as to what is going on. But I do manage to get confirmation that I’m booked in and am probably high on the list.
Then time passes and patient after patient is called for their appointments. Its all feeling wrong so calling out again gets reassurance from a nurse that I’ll be called soon. More time passes and still I feel like the ghost at the feast so have to steel myself to call out yet again. You can imagine that I’m probably getting some odd looks by now and no-one is sitting near me! But thank goodness I did: another nurse checks the list and I’ve never been booked in. He wants me to take my appointment card to the clerk whom I won’t be able to find and who has it already! And the clerk is apparently too terrified to come to me. I even think of phoning him but my mobile won’t work in this basement.
I’m isolated and ignored – full of despair and anger, on the verge of tears. I have just no choice but to make another fuss and call out again when I hear someone passing. A lucky move as I hear the mellifluous voice of a consultant I’ve known for years. Not only does he get everything sorted but also has a solution to my latest eye problem which avoids an utterly ghastly alternative. But it still feels like a prison breakout when I escape after all the hours of waiting and misery. I’m back on the pavement again waiting for the taxi but the driver hasn’t read the booking details to ring and find me. So more phone calls to locate him – about six foot away!
It never rains but it pours: on top of the stress of the day, I’m really late and will have to pay a penalty fare on the train home. But every cloud has a silver lining in the shape of the wonderful station staff: I’m whisked away to the train (gratefully avoiding the next one that was immediately cancelled) and where the guard waives the penalty because of all the train disruptions. So it’s the reverse pass-the-parcel home – hurrah!
And I’m pretty desperate to get there as, you can imagine, having to ask for help to find a loo amidst so much misery would have been impossible. Suppressing bodily functions for at least 10 hours is one of the skills one learns early!
So it’s the destinations rather than solo travel that present most problems. Sometimes its just thoughtless design like the hospital café – whoever would have thought that blind people might try to use it? But, more frequently, it’s the people and the processes that leave someone like me utterly vulnerable and isolated, unable to get help and struggling between anger and tears. Just a bit more thought would make most things so much easier. All of this might seem a bit trivial but molehills do become mountains when you are pretty helpless.

Grumble of the month.
It’s not like me to be so full of woe. But have you seen those free smoke alarms installed by the Fire service – I think that they particularly targeted older or disabled people. At the time, it seemed like a great idea and they put up several around the house. But there’s always a catch: the batteries aren’t replaceable. So, when the power runs out, they bleep. When the first one went in the kitchen, it drove me so mad that I risked getting on a chair and, when I could eventually feel it on the ceiling, just ripped it down. It bleeped for days outside until the rubbish bin was collected. Hopefully, I’ve just dealt with the last one this week – having had the ceiling of that room recently painted, I was a bit more circumspect so got a helper to mount the step ladder and cut the wires. With the endless beeping instead of the ticking, it felt a bit like bomb disposal! Now I have much better combined alarms for smoke and carbon monoxide that can be installed at an accessible height, have easily replaceable batteries and even speak the type of hazard: much better and much safer all round.

Penny Melville-Brown

Disability Dynamics ltd www.disabilitydynamics.co.uk

Helping disabled people to work since 2000

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